DAY 1, Friday, May 26, 2017
What the heck happened?
It was supposed to be an easy morning: optometrist appointment at 8 a.m. and then a quick trip to Kaiser Urgent Care in Wildomar and then back home to relax for the long weekend. Eye appointment went fine, just a new pair of glasses and an order of contacts to switch off. I thought about skipping the Urgent Care trip since it was 10:00 a.m. by the time I got done with my eye appointment and I was just tired – plus it was probably just taking my body longer to recover from the nasty flu that hit our family in March. I decided to get it out of the way, we had jiu jitsu events coming up on Sunday and I wanted to ask for an inhaler to help me breathe so I wouldn’t turn purple again while rolling.
Man I really need to up my cardio…
The day before, Tim and I were training and I fell out of the warm up…the freakin’ warm up…one lap and I couldn’t even make it without seeing stars and wanting to pass out…
So into Urgent Care I went, coffee and new book in hand, prepared for the longer waiting time because it was Memorial Day weekend. When I finally got in, the PA asked how long I had been having a hard time breathing.
A few months now? I started wheezing a few weeks ago when my coach pointed it out…but yesterday was the first time I really felt like I couldn’t catch my breath and wanted to topple over.
The PA put in orders for a chest x-ray and more waiting. When she called me back, she pulled up the image and said there was an “opacity” that was coming up…the left side of my lung was clear but the right side was really cloudy and since they were a small urgent care, I would have to drive to Kaiser Riverside for a CT Scan.
“It’s more than likely just walking pneumonia like you said, but I want to make sure that it’s not something else, Mrs. Barron.”
Great. 45 minutes in holiday traffic going towards Riverside? So much for my “easy morning”.
I checked into Kaiser and get sent straight to Imaging for my CT scan. 45 minutes later I’m waiting in an Urgent Care room. A new PA comes in and asks me the standard questions, what are your symptoms, when did they start, etc. The PA pulled up the CT scan and stood there staring at the screen.
“I’ll be right back.”
The PA shuts the door behinds him and makes a call in the next room.
“Get me oncology or IR right now in Urgent Care”.
Well that’s not good…
15 minutes later a nurse comes in and leads me to a quiet area in the back.
“Mrs. Barron one of our specialists is on their way to talk to you. Just relax back here for a while and he’ll be in here shortly.”
Oncology – private room – crap.
Dr. Shah comes in and introduces himself as the attending Internal Medicine Physician.
“Mrs. Barron I wish I could have met you in better circumstances…”
“There’s no good way to say this but we found a mass on your right upper lung.”
“It’s pretty significant in size and we are going to need to check you in to monitor you over the weekend and hopefully get a biopsy.”
“Well we can’t definitively say its cancer without a biospy, Mrs. Barron.”
It’s Avie. Stop freaking calling me Mrs. Barron. So you’re saying I have cancer…
“Is there someone you can call? To gather some things for you?”
I need to call my husband right away and get someone to take care of my kids…
So I Can’t Just Take a Claritin?!?
I call Tim and try to figure out how to say what I’m about to say to him on the phone. How do you tell your cancer-surviving husband who’s been in remission for 14 years that his wife now has possible cancer? Well, I verbal diarrhea’ed it as soon as I heard “Hey.” Tim was by my side in less than an hour. My rock, my stronghold, turning the corner to see me with a “this better not be one of your stupid pranks/what the heck is happening right now” looks…
Dr. Shah comes back to meet with both of us and again has to explain to Tim what he tried to explain to me, but I only retained 20% of what Dr. Shah said and I translated it to Tim as “They found a small mass and I have to stay here for a few days.” Dr. Shah once again pulls up the CT scan image and measures the big white blob on my right lung – 10.8 centimeters. “We are very concerned because you have a lot of fluid build-up and the mass is pushing on your superior vena cava which is why you can’t breathe.”
“Babe…you said it was a small mass…”
Yeah, it’s tiny on the screen!
“Babe…it takes up your entire freaking lung…”
So, I can’t just take a Claritin?
Dr. Shah tells us that I need more testing and that his first guess would be that this mass is a lymphoma but without a biopsy everything is just a guess. More waiting since there’s no room ready for me. We reach out to our Monday Night Impact Group for prayers.
We get settled in for the night but Tim can’t stay the night since I’m in a double-room, so he heads to my mother-in-laws to sleep. Nothing to eat after midnight, since I’ll be needing a needlepoint biopsy in the morning. How can the hospital possibly expect me to sleep? All I wanted was some antibiotics and maybe an inhaler and now I might have cancer?
DAY 2, Saturday, May 27
There’s a First for Everything….
I’m wide awake at 6 a.m. Couldn’t sleep, tossed and turned, plus my roommate wasn’t exactly quiet, sleeping beauty. I learned way too many intimate details about roommate 5101A and had about enough of her colorful way of criticizing the nursing staff all night.
Dr. Shah comes to see me at 8 a.m. with a I’m-so-sorry look.
“No biopsy today, Mrs. Barron. It’s a long weekend so you’ll probably need wait until Tuesday, but we don’t want to discharge you because we want to start you on steroids and see if the tumor responds. We know that it’s either lung cancer, a lymphoma or a gene cell tumor…all three of those are cancers…based on the CT scans.”
Tim comes in a 9 a.m. and I tell him the latest update. We’re pretty bummed at this point. Hadn’t we seen enough cancer in the family? First Tim, then his mom, and now me…what are the chances? I can’t keep it together anymore. Hot tears run down my face as Tim pulls me close like only he can to comfort me – his arms have always been my home. He reminds me that he’s here, will always be here and we need to pray.
At 9:30 a.m. Dr Shah comes back.
“I have better news! I’ve been on the phone with my supervisors and senior staff and we are going to do the biopsy today. In ten years, I have never had both the pathologist and the radiologist come in on a long weekend, so you are a very lucky young woman!”
God’s here. It’s not luck.
The pulmonary specialist comes in before 11 a.m. and explains to us that there is a disagreement on how the biopsy should be done. He wants to do a “simple” thoracentesis – stick a needle in my back, between my ribs, through the lung wall and drain the fluid inside to test it for cancer cells. The radiology oncologist, wants to put a stint in my superior vena cava (SVC) to relieve the pressure from the mass. The internal medicine doctor wants to do the needlepoint biopsy but they are worried about puncturing the blood vessels in my chest wall. Surgery is not an option because the mass is too close to the SVC and if they make an error I could bleed out. So we wait until they can agree how to proceed.
The love via text messages, phones calls, Facebook messages, PM’s begin to come in. So many people asking how we are, how we are doing, if there’s anything they can do for us. It’s amazing…
You are loved. You are not alone. I’ve got this.
The afternoon zooms by, more chest x-rays, more blood work – I’ve been poked, prodded, scanned – all without being fed. I’m hangry and Tim is quiet as he watches me go through everything while holding my hand. It’s 4:30 p.m. and I haven’t been able to eat.
Someone is going to get their head ripped off soon if I don’t get some food….
Finally, it’s decided – CT guided needlepoint biopsy it is. My transporter comes to take my to CT for the biopsy. Tim has to wait outside while I get wheeled in the CT room. The radiologist and ER nurse welcome me and explain what they are about to do. Contrast goes into my IV followed by a happy juice cocktail to help with my anxiety. I am going to be awake for the procedure while they stick a few large needles in the front of my chest where I can see so they can get samples.
Relax, daughter. I’ve got this.
No accidental punctures, no damage to my blood vessels and no lung collapse – the biopsy runs smoothly and off goes the pathologist with four samples to test out right away. I finally get back to my room and Tim and I play Monopoly Deal until my food comes in. (It should be noted that Tim only kicked my butt the first five times because I was weak from not eating…) A hot tray of hospital food gets brought in and its divine – anything tastes good when you haven’t eaten for 18+ hours and are stressed out. Tim leaves for the night to get some rest and shortly after, our sweet friends from our home study group come in to pray over me before I turn in for the night.
Thank you, Lord for sending these two beautiful people to remind me that I am going to have a great support system.
“In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ;”
-1 Peter 1:6-7
DAY 3, Sunday, May 28, 2017
You Are Not Alone.
Another long night with Roommate 5101A, but the nurses snuck me earplugs, crackers, lumpia, ice cream and sodas to quietly tell me how sorry they are that ended up in a “crappy” situation…After breakfast, Dr. Jinh, the onsite oncologist comes in to tell me preliminary biopsy results came in – its a malignant tumor – definitely cancer. More testing needs to get done to determine the type, staging and if it has spread to anywhere else in my body. They order a thoracentesis for late afternoon with the pulmonary specialist hoping that they can get more clues and closer to a formal diagnosis by testing the built-up fluid in my lungs: cancer cells in the fluid means its spreading…The charge nurse decides to switch me to a different room after noticing that I haven’t been sleeping well.
The day goes by quickly. I’m visited frequently by some of my favorite people in the world, my sweet Katherine, my mother-in-law and sister-in-law, our jitsu coach and his wife, my jiu jitsu teammates. Each new group bringing tons of encouragement, prayer, love and laughter. It’s overwhelming in a fantastic way to know that people are there to support you…like really support you when you need it. Not just, “I’m here for you” and keep scrolling to the next FB post…but a genuine what do you need, we’ve got the kids, we can clean, fold laundry, drive you, cook for your family, feed your dogs, lift you in prayer, lay hands on you and love on you kind of support. Tim and I decide that it’s best from this point forward to ask for space because the next fews days are going to get harder…much much harder…
You are not alone. Let them love on you and help you.
After everyone leaves, Dr. Ninan comes in. He performs the thoracentesis and pulls out 1000 ccs of fluid (1 liter or half a soda bottle for those who can’t math…). My chest burns and I can’t stop coughing. Dr. Ninan says its completely normal now that my lungs have room to expand.
Another CT scan before I’m allowed to settle in for the night…this time to scan my abdomen and pelvis area for enlarged lymph nodes. Tim tucks me in and heads home to pick up the kids to bring to my in-laws house for the night. We’ve decided to keep them close until I can go home so they can see me when they want to. Up to this point, the kids were with my parents enjoying some time on the beach with family. We didn’t tell them anything before they got dropped off on Friday other than Mommy is feeling sick and has to see the doctors to find out what’s wrong.
That night, Tim explains to the kids that Mommy has a growth on her lungs that’s been making Mommy tired and that’s why she coughs and can’t breathe all the time. He tells them that the doctors and God are healing Mommy and that everything is going to be OK. God healed Daddy and Grammy and God is going to heal mommy but it might take a little time. Mommy needs you to love on her and hug her and kiss her and help her out a little more so that she heals faster. And that’s how we explained to our kids that Mommy has cancer….
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Day 4, Monday, May 29, 2017
Your Faith Has Made You Well…
Roommate 5102B hates me. I turned on the overhead night over my bed last night to read my devotional and spend time in the Word and she yelled at me to turn it off. I got up to use the restroom and she told me to quit making a racket…I sat quietly with my headphones in trying to give her grace because she seems to be in a lot of pain, but I got labeled as a disrespectful little wench…My charge nurse wasn’t having it…I got moved again, but to a solo room with no roommates because the nurse said “You don’t need that negativity in your life. You let her be miserable and you keep that joy little lady!” I’m now in 5105…
Tim comes by at 9 a.m. Starbucks in hand and Dr. Shah follows him. Still no final results yet from the biopsy and no results from the lung fluid but CT scans are looking a lot better with the fluid gone. The mass hasn’t responded to the steroids they have been giving me but it might still be too early for us to see results.
Dr. Jinh comes in after. We ask him what the next steps are but are told we just have to wait. More than likely I will need to have a localized radiation treatment to try to shrink the tumor since we can’t operate on it. For the time being, his tentative plan is to send me to PET scan in Ontario tomorrow with an order for a brain MRI as well…more clues to figure out all the pieces to finding out what this thing is on my lung…He would like for me to start chemotherapy while I’m here at the hospital followed by six weeks of chemo out-patient treatments, 5 days a week. That’s the penciled in plan for now unless the final biopsy tells us we need to go a different route…he is hoping for results on Wednesday.
Tim and I finally have time alone just us. We’ve hardly had time to really check-in with each other. My partner in crime who’s been trying so hard to keep a strong front finally starts to let it out…”This sucks. It’s not fair. I wish I could take the pain for you. I don’t want you to go through this…”
“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”
-2 Corinthians 4:16-19
Tim went through his cancer battle 14 years ago. He had surgery and rounds of chemo. He was in the trenches of the battlefield that I am going to step onto soon. My husband always tries to place the weight of the world on his shoulders so that my burden is light and easy. God’s calling for me is to be his helpmate – not to stand by and watch him carry the load on his own. I believe that God’s placed the perfect “nurse” to help me through this – through Tim. He is going to know exactly what I’m going through mentally, physically, emotionally because he has BEEN there before.
Don’t tell me that is just a coincidence and don’t tell me its not a God thing.
Pastor Ryan and Tracy come to visit with us. They pour out their love, their encouragement, their hearts and their prayers for us. They are with us to say the exact words that God wants both Tim and I to hear to know how we need to go forward with what’s coming. They speak to us at the same time, yet God plants a unique message in each of our hearts. This road that is ahead of me is not just about me. Its about us as couple, us as parents, us as family, us as part of church family…
“Rise and go your way; your faith has made you well.”
Luke 17: 19
God is asking us to surrender to Him completely before we get ready to fight…to follow His lead without knowing where He is sending us…to wait on His timing without knowing when it will come…to expect a miracle without knowing how God will provide…to trust in His promise without understanding the circumstance.
Let go so I can get to work. You don’t always have to be in charge…I’ve got this…-God
Today has been emotional. Lots of tears and truths and Tim and I feel completely empty. But not empty in a depressed, sad way – empty in the sense that we realize that we need to release our fears and worries to be able to receive what God is getting ready to place in our hands.
Tracy suggested I blog…that it might be therapeutic to put it out there…so here it is..the start of my blog…I want to be able to look back and remind myself of how He is moving in our lives once the chemo brain sets in and I might forget the details…so I’m going to try to catch them and update as I go along…
This post originally appeared on Breathing Again. It is republished with permission.